What Were Your First Symptoms of ME/CFS?

[Merida]

Acouchy- This is a very interesting account. Did you have a fever preceding all of this?

 

[acouchy]

Acouchy- This is a very interesting account. Did you have a fever preceding all of this?

Merida... Unfortunately I can't remember if I had a fever or not. 17 years is a long way back for this brain to remember. But the arm paralysis, extreme pain and how bizarre it was to recover so fast I will never forget. I wish I could remember more of my symptoms that day. I know the walk-in clinic I went to is still there. I wonder if they keep patient files indefinitely. Would be interesting to see what I said.

 

[PamJ]

Lisa, very interesting comments. I had regular migraines on/ off from age 22 to about 38. Then, later had a few visual migraines - like you describe. No fatigue, no body pain except rt. hip. No sleep problems. Sometimes had trouble with heat - could get blotchy red face.

Fast forward to 1998 (age 49) - went to chiro for sore, popping right hip after yoga classes. No pain elsewhere. He twisted and pulled neck/pelvis. Then had many visual migraines, couldn't walk upright, only slept 1 -2 hour per nite for 4 months. Terrible pain all over. The whole syndrome full blown. Now mostly couch ridden, hard to shower or go to store. Did better for a while - Wellbutrin helped - after one year totally bed ridden.

Been trying to figure out what happened and why. Think I was born with a slightly tight spinal cord( confirmed by neurosurgeon in 2005 - expert in tethered cord syndrome. ) Also have mild scoliosis - which can put twist /torque in spine and neck. Also, scoliosis may have other associated boney amomalies - like small holes in sides of neck vertebrae. Important, as the vertebral arteries to the brain pass through these holes. So, twisting or misalignment of the neck vertebrae can also impinge blood flow. Called vertebral artery syndrome, and visual disturbances are classic. Please read.

I think scoliosis makes recovery from injuries great and small difficult. Plus, Chiari, tethered cord, syringomyelia can all be associated scoliosis . So there may be multiple 'glitches.' Tethered cord symptoms have been know to develop after seemingly benign events: cheerleading, high- kicks, a fall on tailbone, childbirth, hitting the car brakes, and even sitting in a poorly designed chair over a period of time. Very insidious.

My health story is long, and goes back to my childhood. But 5 years after being diagnosedwith CFS by Dr Cheney, 3 neurologists agreed I had a Chiari Malformation. After decompression surgery, I was no better at all. Strangely, my neurosurgeon had trouble sewing up my dural membrane, because it was very thin, and kept tearing. Even after putting in a dural patch, there was still some tearing & leaking of spinal fluid.

 

[Merida]

Pamj,
Oh - wow. Your story makes me shudder. What you have been through. I have been wondering if people with Chiari may have another problem that it not identified - that is, vertebral artery syndrome. It can produce the same symptoms, and, like Chiari, can 'run' in families that have varying degrees of scoliosis.

I told my story somewhere in forums- ie, neurosurgeon diagnosed me with small posterior fossa/short clivus, and very abnormal CINE flow study. So, I have physical features of Chiari, but no true Chiari - though my cerebellum hangs low on one side.

Also, the stability/position of my sacrum has big influence on my neck/cranial base and 'Chiari-like symptoms" - including fatigue.

As well, please read about dural and epidural arteriovenous malformations. Neurosurgeon Robert Bray in Los Angeles has recently described a thoracic epidural arteriovenous malformation that may be very important for pain in younger women. Read about this.

Neurosurgeon Robert Bray has also diagnosed and treated tethered spinal cord ( with microsurgical technique) in Lolo Jones, the Olympic athlete. Great story.

Have you ever had the specialized vertebral artery ( in the neck) blood flow studies ??

Also, don't know where you are, but there are some osteopaths who are not doing regular osteopathic manipulation, but are really Qigong master healers. I accidentally found one ( not knowing !!) and he says my fatigue will be gone by January. He is very special. I am in L.A. area. He takes Medicare !!

 

[Merida]

Merida... Unfortunately I can't remember if I had a fever or not. 17 years is a long way back for this brain to remember. But the arm paralysis, extreme pain and how bizarre it was to recover so fast I will never forget. I wish I could remember more of my symptoms that day. I know the walk-in clinic I went to is still there. I wonder if they keep patient files indefinitely. Would be interesting to see what I said.

Acouchy,
There were recent reports this winter of a strange virus, 'polio-like,' that was paralyzing kids around the country. My son ( age 5-1986) had lab-documented EBV and had very painful fingers/toes, symptoms of thyroid/adrenal problems, severe urinary frequency, iirritable bowel, and more - on/off for years.

So, I think these viruses can be very insidious, and can do anything weird.

I keep trying alternative healing. Have had success with Chinese medicine docs, and some very strange experiences. I just don't know. But, I will never believe that we can not heal. Somehow, there must be a way to accomplish this.

 

[PamJ]

Pamj,
Oh - wow. Your story makes me shudder. What you have been through. I have been wondering if people with Chiari may have another problem that it not identified - that is, vertebral artery syndrome. It can produce the same symptoms, and, like Chiari, can 'run' in families that have varying degrees of scoliosis.

I told my story somewhere in forums- ie, neurosurgeon diagnosed me with small posterior fossa/short clivus, and very abnormal CINE flow study. So, I have physical features of Chiari, but no true Chiari - though my cerebellum hangs low on one side.

Also, the stability/position of my sacrum has big influence on my neck/cranial base and 'Chiari-like symptoms" - including fatigue.

As well, please read about dural and epidural arteriovenous malformations. Neurosurgeon Robert Bray in Los Angeles has recently described a thoracic epidural arteriovenous malformation that may be very important for pain in younger women. Read about this.

Neurosurgeon Robert Bray has also diagnosed and treated tethered spinal cord ( with microsurgical technique) in Lolo Jones, the Olympic athlete. Great story.

Have you ever had the specialized vertebral artery ( in the neck) blood flow studies ??

Also, don't know where you are, but there are some osteopaths who are not doing regular osteopathic manipulation, but are really Qigong master healers. I accidentally found one ( not knowing !!) and he says my fatigue will be gone by January. He is very special. I am in L.A. area. He takes Medicare !!

I have never had any tests on my arteries.
I still have all the Symptoms of CFS-ME, including POTS, orthostatic hypotension, and high antibody titers to EBV & CMV.
I am now living near Detroit, MI. Perhaps I should see a neurosurgeon again? I haven't seen one for over 10 years.

 

[Merida]

I have never had any tests on my arteries.
I still have all the Symptoms of CFS-ME, including POTS, orthostatic hypotension, and high antibody titers to EBV & CMV.
I am now living near Detroit, MI. Perhaps I should see a neurosurgeon again? I haven't seen one for over 10 years.

PamJ,
Neurosurgeon? I just have no clue. I first learned about vertebral artery syndrome recently in Scoliosis and spinal Pain Syndrome by Professor Valentyn Serdyuk - orthopedic surgeon and specialist on scoliosis. I am repeating from earlier posts somewhere on this site. He discusses that the vertebral arteries thread through holes in the lateral extensions of the neck vertebrae. There is much individual structure variation in these neck vertebrae, and sometimes these holes ( or foramina) are small. Even mild scoliosis ( or whiplash) can cause a twist in the neck vertebrae, making the situation worse.

Of interest, nerves of the sympathetic part of autonomic system wrap around these vertebral arteries. So, when the neck is disturbed, both blood flow to the brain and autonomic nervous system are affected. When blood flow to any area is diminished micro organisms take full advantage, and we can not clear them. Best example - bed sores, diabetic ulcers.

Regular Doppler ultrasound is not the best diagnostic tool. MR angiogram is needed, as bones cover most of the vertebral arteries. I brought this up with my neurologist and she would not order one, despite the fact that I have terrible neck issues and dysautonomia. So, . . . Maybe a neurosurgeon specialist in vascular disorders is needed?

 

[dee]

3 symptoms,
1.SEVERE EXHAUSTION, HUFF PUFF, HUFF PUFF
2. SEVERE WEAKNESS
3. COULDN'T AWAKEN, SLEEP, SLEEP, SLEEP. LIKE IN A COMA.